RFK Jr. is getting personal authority over who to kick off of Medicaid

Freddie Elmore hasn’t worked for around 20 years. Now, he’s trying to figure out how, and if, he can return to the workforce—not because he thinks he can do so while managing his health, but because he is concerned that he will lose Medicaid.

To retain Medicaid coverage, Elmore, who lives with disorders including central pain syndrome and Long Covid, may soon have to work at least 80 hours a month—while caring for his autistic son 49 hours a week, commitments he’s afraid he won’t be medically able to juggle—unless he’s able to win exemptions on terms expected to be set almost entirely by Health and Human Services Secretary Robert F. Kennedy Jr.

In July, Congress passed President Trump’s budget bill, which funds sweeping tax cuts for the wealthiest Americans through an estimated $911 billion in planned cuts to Medicaid, and in particular by establishing requirements that would force most Medicaid users to work at least 80 hours per month in order to stay on its rolls.

The ethos behind Kennedy’s Make America Healthy Again movement blames individual people for their chronic diseases—particularly by associating health conditions with choices like vaccination—and links Medicaid users’ value to their economic productivity, as when Trump’s Agriculture Secretary, Brooke Rollins, said in early July that able-bodied people on Medicaid should replace deported migrant farm workers.

Now, Kennedy will have almost total, personal authority over his department’s definition of who is “medically frail” and who has “special medical needs,” definitions that will play a central role in determining who is actually able to get exemptions from Medicaid work requirements—and how Medicaid users will be screened.

There are multiple ways disabled people could lose Medicaid coverage when work requirements hit, says David Machledt, a senior policy analyst with the nonprofit National Health Law Program. “Sometimes, it may be the definition being too narrow to capture people who have real barriers to employment,” he said. “There’s also just as likely going to be bumps from and coverage loss that comes…when the state sets up a verification regime.”

A person with debilitating chronic pain, or a serious autoimmune illness, may appear “able-bodied” by the standards RFK Jr. appears poised to implement—even as they face hurdles in qualifying for Social Security disability due to not being considered disabled enough. HHS declined to answer a series of questions for this article, instead offering a general statement that the agency “remains committed to protecting and strengthening Medicaid for those who rely on it…while eliminating waste, fraud, and abuse.”

“It’s completely counterintuitive to not allow people to have health care until they’re at a point where they can ‘prove it,’” Justice in Aging attorney Gelila Selassie told me. “At that point, they’re definitely not going to be able to work, and then, more importantly, they don’t have access to health care.”

Machledt hopes that states will be allowed some room to define disability exemptions, which could lead to a “broader standard that would be more appropriate for someone who has a barrier to employment.”

But Mina Schultz, a longtime health policy professional and cancer survivor with chronic kidney disease and hearing loss, is concerned about a state-level approach. 

“People in blue states [may] have an easier time getting an exemption than people in red states whose representatives think that they don’t deserve health care,” said Schultz, who lives in New Mexico and is currently not working in order to take care of her health.

The reality is that more and more people are becoming chronically ill through Long Covid and other health conditions that Covid can trigger, many of whom can’t work the required half-time—80 hours per month—and some of whom can’t work at all. Around half of the half of living with Long Covid fit the criteria of ME/CFS, a debilitating condition that is characterized by post-exertion malaise, fatigue and chronic pain. 

In Georgia, the only state that currently enacts Medicaid work requirements, such conditions generally aren’t recognized or incorporated into the state’s criteria, according to Laurie Jones, the executive director of #MEAction, which advocates for people with ME/CFS—a condition some of the state’s reviewers of Medicaid exemptions aren’t even aware of.

More broadly, Medicaid work requirements in Georgia aren’t exactly working. As reported by ProPublica and The Current, only about “7,500 of the nearly 250,000 eligible Georgians were enrolled, even though state statistics show 64 percent of that group is working.”

Sharon McLennon Wier, the executive director of the Center For Independence of the Disabled in New York, told me that Medicaid users out of the workforce have been calling her center, concerned about whether they’d qualify for exemptions. Like other disability professionals, she doesn’t have answers for them—HHS’ criteria are a black box that the agency refuses to offer any insight into.

Whatever definition RFK Jr. lands on, no definition of “medically frail” and “special medical needs” will serve to do anything other than lock people out of Medicaid.

“These things will never work,” Machledt said. “They’re not really aiming at improving employment rates anywhere…it’s just a way of cutting people off of coverage and then blaming them for it.”